Waiting Game

Jan 8 2010

The days have merged into one another and now a week on from my last post, we are still resident at Addenbrooke’s Hospital, still a long way from home......

The days have merged into one another and now a week on from my last post, we are still resident at Addenbrooke’s Hospital, still a long way from home and still wondering what on Earth is going on. The first part of the week was just spent with Camille on Antibiotics, just waiting for something to change or reveal itself from the blood cultures taken at Ipswich and then at Cambridge. The days drag by and the miles clock up with nothing really happening, nothing at all.

On Tuesday I was invited down to our Bristol office to have a session with their sales team; the meeting was due to take a large part of the day, but after an hour of conversation and good hard presenting skills the flakes began to fall. As I glanced past the large plasma and out into the Bristol sky, the white canvas of snowy cloud was being peppered with snowflakes as large as my fist. It’s amazing how quickly you can talk when faced with a treacherous two hundred mile return journey. “Any questions? No? Good!” and I was away, flashing past Gordano like an orange Nissan on heat. Thirty miles later the snow stopped falling and the drive became a leisurely cruise down the M4 corridor. The snow was following me apparently, and had I left any later I would have been facing a night snuggled up to my laptop bag with only my suit jacket and a packet of Wrigley’s Extra to keep me warm. Thankfully I was back at the hospital by 17:00pm with a smiling Camille and a weary Hayley.

All week we have been blessed with both of our consultants, Mr Garnett because Camille’s shunt scar was still a little inconsistent and Amos, because every time he walks past we bellow at him to answer some more of our questions. “Have you heard of this treatment?” we pose. “What from the Brakenheimschneister clinic?” he retorts. “No, never heard of it”. We’ve pushed him too far now, Amos is now thinking of us in the car on the way to work, I dare say he even ponders our questions when taking on other day to day tasks outside of work. In fact, we’ve pushed him so hard that he has now made a pledge, a resolution if you will, to write a book about Cancer and what to believe and what not to believe.

Mr Garnett has no such project, probably because we are too scared to ask the multitude of questions that Amos gets hit with. I’m still desperately trying to get a “Good Question!” response from Mr Garnett when Hayley regularly gets one and even my Father got one early on. As Mr Garnett stands in front of us, talking in very short, Gordon Ramsay style sentences, I’m busily scanning the outer reaches of my thought processes to think of that one question that will get Mr Garnett to utter those special words. Hayley asked Amos why men have nipples earlier, I’m not sure what sort of reaction I would get from the same question to Mr Garnett but I’m getting so desperate that I may have to give it a crack.

The snow this week has caused me to be a little later each day, so when I received a call from Hayley on Thursday whilst I was en route to the hospital I knew it wasn’t going to be good news. Camille was due to have her stitches out on Thursday, and Mr Garnett was ready just in case she needed taking up to theatre. As Hayley leant across to give Camille a kiss on the head, her pursed lips were met with a moist brow; moist or something else? Hayley laid back down flat, pretending it didn’t happen, hoping that there was a drip from the ceiling, praying that she hadn’t just kissed an oozing scab. The latter was true, Camille’s head had began to show the signs that we were all dreading; it meant a shunt revision.

So, later that morning Camille was taken up to the Neuro Theatres to have her ninth operation, the seventh on her head since she was diagnosed in June 2009. We followed her up and went through the all too familiar process of being greeted by a guy in scrubs (our friend Tim was not there on Thursday, instead a strangely English sounding Raoul was our host), he then shepherds us through to the anaethestics room where she is easily put under by a guy with a syringe of white fluid. We then give her a kiss and leave, and then we wait.

The team upstairs had suggested that it would be a two hour procedure, so we naturally doubled it and waited patiently downstairs. Two hours on the dot and the phone rang. Like all those other times before, we raced back up to recovery to see our little girl. A number of times we’ve been shocked when confronted with the post-operative Camille and this was no exception; due to the level of infection, Camille was required to have her shunt taken out completely and for a temporary drain to be inserted for at least a week so the infection can be cleared. The temporary drain is a tube coming out of her brain clearing the excess fluid that can’t get past the tumour. The reservoir that the fluid gets drained into has to be level with her ear otherwise it could potential drain too much fluid off the brain or stop the excess levels from being relieved. So imagine this, every time she wants to sit up or lie down, we have to get a nurse to adjust the height of the collection device. This is going to be in place for at least a week.

I’m sitting beside her now in hospital as Hayley has taken the opportunity to get home with Lucia and spend a few hours with her; a much needed exercise for both of them as they really miss each other and Hayley needs to be away from the hospital from time to time. Mick the chef has now gone home for the weekend, I am now concerned for my stomach as without the regular trickle of goodies I may begin to lose weight.

Next week we have little to get excited about; we’ll wait, ponder, and adjust the temporary drain waiting for our two magical consultants to say “Let’s go”.